Tuesday, April 3, 2018

Spring Break 2018 ~ Myrtle Beach, SC

South Carolina here we come!  We decided to take advantage of our timeshare for Spring Break this year and drove south.  We broke up the trip on the way down and got tickets to a Fayettville Marksmen hockey game.  We've had so much fun going to Hershey Bears games we knew the kids would have fun.  It was fun seeing the military influence on the town.  They even had a "puck shuck" where you could buy pucks to throw on the ice after the first period and try to get close to a target and win a jersey.  Front row seats made it easy for Cole to get engaged with the game and the crowd was a lot of fun!

We got down to our resort on Sunday and despite being a little chilly, we promised the pool and we held to our promise.  The pool water was a balmy 85 degrees so it was great while you were in the water....but getting out was pretty chilly!  It did warm up Wednesday and Thursday though and we got in a lot of pool and beach time.  It was fun because there were five pools right outside our building so you had your choice!  That included a waterfall the kids thought was really neat.  It landed in the lower pool and came out with such force that it pushed you in the water.  They were entertained with that for a long time!

We also visited Boardwalk on the Bay - it's a large shopping area with restaurants over a lake with bridges in the middle.  We ate at Margareta's for lunch where they had a two story pitcher that filled and then drained after the volcano.  We took the kids to a store called RideMakerz and let them pick out cars to build.  RideMakerz is just like Build-A-Bear but for cars.  You can pick the body, chassis, motor/no motor, upgraded tires, rims, and of course extra pipes and sticker kits.  It's fun because they let you screw the car together and if you want to run it like a pit crew at Nascar they have timers so you can race against time or the person next to you.

The resort had a lot of activities for the kids.  Cole decided to join the Ninja Warrior competition at the playground one morning.  I should have realized it was going to be timed and practiced ahead....lesson learned! But it was a fun for him to see how quickly he could run up the stairs, across the bridge, up the climbing wall, up the spiral stairs and come back down the slide.  It was harder than he expected but he still had a good time.

They also decided to try mining for gems and fossils!  It was a lot of fun sifting through the sand.  They got a bag and a pamphlet that explained all the gems and fossils.  And Reagan did a great job holding the sifter with two hands.  Amazing the little things that make me realize how far she has come!  They found huge Amethysts, shark teeth, ammolites, and sea lilies!  It was very entertaining and Cole has been carrying around his "mummy" gemstone for a week now and has decided to ask Grandpa to help him bore a hole in it to with his lapidary equipment so he can make a pendent just like the Egyptians did.

The resort also hosted an Easter egg hunt for the kids divided by age groups.  Luckily Reagan and Cole were in the same group.  It was small but the kids had fun.  Egg hunts are extremely challenging for Cole because kids are super quick to grab the eggs and it takes a little longer for his eyes to scan, find and pick up.  But we did it together and they both collected several.  They were able to turn them in at the end for a bag of candy.

On our last day we decided to get tickets to the Pirate Voyage.  After our experience at Dolly Parton's Dixie Stampede in Tennessee we figured it was worth checking out.  It was a lot of fun and the kids had a blast.  There were Pirates, mermaids, and sea lions!  Lots of acrobatics, dancing and singing.  We were able to get front row so it was a little easier for Cole to see.  They also had a lot of fire and skeleton costumes with the black light which were great for him.

The one resounding theme for our trip was Reagan with her lacrosse stick.  She took it to the pool, took it down to the ocean, and had it in the condo asking to throw her the ball.  It's fun seeing her excited about it this season.  Now that Winter is hopefully behind us and the snow is done the season should start full swing!  Now if only we can hold off the rain so they can have a few good practices before the next game!







Saturday, March 31, 2018

Skiing, Tubing, Luray Caverns and a visit to the Ophthalmologist !

Tomorrow is April and I haven't posted a single entry all year !  That means two things.  First, work has been insanely busy and second, the kids have been healthy and life has been normal!  The year hasn't been all work though.  We've had several fun adventures!

We started January with a ski trip to Wintergreen.  We had a great time and Johnny and I actually broke out our skis too! Neither of us had been skiing since before having children.  Little did we know our bindings were no longer serviceable....which meant new skis for both of us!  We had a great experience at Wintergreen with the adaptive program two years ago and decided to take the kids back again. Each of the kids had a team of three instructors!

It has been hard getting lessons in any of the adaptive programs since they fill up quickly.  We also found a program at Canaan Valley but they didn't have any availability all year when we called in January.  They recommended we contact them in November next year.  Unfortunately it was also a very short ski season this year.  The kids loved it though and we are looking forward to planning more trips next year.

We literally only had one snow of about 4" all winter so we needed to go to the mountains to find snow.  We also took advantage of the snow and took the kids tubing to Liberty.  It was insanely fast but everyone had a really good time.  Despite it being very cold, they worked up a sweat and wanted to take off their coats!

In addition to skiing and tubing, I took the kids with a few of my nieces and nephews to Luray Caverns.  I've been wanting to take the kids for a while but haven't had the opportunity.  It was a great experience and they were the perfect age for it.  I've been several times before but seeing the excitement on their faces was so fun.  Cole walked the entire tour with the guide asking as many questions as possible.  Also, the guide asked if anyone wanted to sing and my niece Jacquline sang Ave Maria.  It was absolutely beautiful!

In addition to all the fun, Cole had his six month appointment with the ophthalmologist. He was dilated at the previous appointment so it was a pretty straight forward visit.  Dr. Jeffries said she is very happy with the improvements from his eye surgery last year.  In previous appointments Cole was unable to read the eye chart from the chair and had to walk halfway to the monitor to start reading the letters.  Although the font still needs to be very large to read the letters, he is able to sit in the chair now.  Unfortunately she doesn't expect to see any additional improvements, but she also doesn't expect his vision to get worse.  She was also happy with his new bifocals.  Unfortunately, however, she felt the optometrist didn't make the bifocal part of the lens large enough and asked to have it increased when he gets new frames next year.

Next up is Reagan's EEG, appointment with the neurologist to review the results, and an appointment with the orthodontist to talk about a palette expander and braces.  But first, Spring Break!


Saturday, January 6, 2018

Another year in the books!

I haven't posted in a while so I have a lot of fun family updates.  First, Johnny finished his doctoral program and is now a doctor of engineering!  We are all very proud of him and looking forward to having more free time!  He's now trying to convince me to get a doctorate of education, but I haven't been convinced yet.  The idea of more school is not exactly appealing after the tough Fall I had with such a heavy work load.  I'm very happy to have such a busy project load, but I also look forward to a little less stress going into 2018!

Fall was filled with many activities including a music recital for Veteran's Day at the Morningside House in Leesburg.  Both kids are taking music lessons from Jessica and Reagan started taking voice lessons.  Both sang with their cousin Jacqueline (who also takes voice lessons from Jessica) and had a great time handing out cupcakes and talking with the residents at the retirement home after the recital.  One of the men was 99 years old!  And everyone liked the performance so much that all of Jessica's students were invited back in December for a Christmas recital and sing along!  And this time both sang solos!  So proud of them for having the courage to do that in front of so many people!

Both kids have also been participating in an after school running program twice a week for two months for an hour. The training ended with a 5K that all Loudoun County Elementary Schools ran together.  Running with the Stars was a lot of fun and I'm really proud of both of them for finishing the race.  They ran with several friends including their friend Hailey.

We followed tradition this year and decided to cut down our Christmas tree at Snickersgap Tree Farm in Bluemont.  As tradition holds, they fought over who got to drag the tree down the hill.  We still haven't perfected how they can share that task, but perhaps next year we'll craft a plan on the way there.  It has become a fun tradition that always ends with Reagan and I putting on the ornaments while the boys watch TV.  And this year we added a new tradition of ordering Chinese food after for dinner.  Sounds like a great tradition to me!

Reagan also got to attend The Nutcracker's Russian ballet this year at George Mason's Center for the Performing Arts! Johnny's dad bought tickets for her and her cousin Leah to go for the first time!  Her mom and I went along with Pop and Nana.  I wasn't sure if Reagan would stay engaged for two hours.  I took the kids to the Nutcracker three years ago at a local high school but that's nothing like the Russian ballet!  Reagan was truly mesmerized.  It was so fun seeing the amazement in her eyes.  Pop even bought tickets to have her picture with a ballerina and take home a nutcracker ornament.  I know she will cherish that for the rest of her life.  So much fun to expose her to culture at an early age.

We started the Christmas season with breakfast with Santa at River Creek Country Club with Johnny's family. The kids get very excited about our elves visiting each day, Fred and Rose.  But Reagan had to be convinced to sit on Santa's lap for the first time this year.  She claimed he wasn't the "real" Santa.  I know our years are numbered for the magic to still be alive...I never realized how quickly that is lost until I had children.

The good news is that they have younger cousins on one side so they can continue to "play along" even when they don't believe.  It is so different when they are the youngest versus their older cousins who get to carry on that magic so much longer!  Having kids has definitely brought the magic back for me over the last 8 years and I hope we can keep it alive a few more years!

We also surprised the kids with a trip to Hersey PA!  This has also become a December tradition.  We usually go to the hockey game the weekend of the Bear Toss where everyone brings stuffed bears and throw them onto the ice after the first goal of the game. All the bears are donated to the local children's hospital.  Unfortunately that game is the first weekend in December and we weren't sure when Johnny would be defending his dissertation so we decided to get tickets later in December.

We secretly packed the kids bags and when we got in the car we told them we were running errands (they didn't see us load the bags).  We got a reservation at the Hershey Lodge for the first time since the new water park opened.  We spent the afternoon at the waterpark and then headed to the hockey game.  We were able to see Cocoa again!  It was a great game and Reagan asked lots and lots of questions about the rules and what the players were doing.  Not only that, Cole was on the jumbotron for the Fan of the Game!  Cole and I also took a walk around the stadium to meet the service dogs.  It was really nice driving the short distance to the hotel and being able to go the waterpark the next morning.

We had a fun Christmas this year celebrating with my family at my mom and dad's with the traditional quiche, fruit soup and tea ring.  Then we had Johnny's family over this year and hosted Christmas at our house.  The kids had a great time and always love having people over.  Reagan's big ask of Santa this year was to have her room repainted and get new comforter and Cole simply wanted a new transformer.  The first time I asked what he wanted for Christmas he said, "I don't really need anything mom."  Then when I pushed he said, "Well, now that I think about it, can Santa bring me a flying hover board so I can fly around the world?" Santa didnt' bring that so we think they were back ordered. Santa also brought a new Nintendo Switch and a basketball hoop. The kids were thrilled!


We closed out the year taking the kids skiing the week after Christmas.  We haven't done that in three years so it was fun seeing them out on the slopes again.  Both really enjoyed their lesson with Two Top Adaptive Ski School at Whitetail Ski Resort and were begging to stay longer.  That was amazing given it was only 9 degrees the day we went!!  We will definitely try to take them again this season. Although Reagan asked if she can skip the lesson next time and just "go down the hill really fast."  God help us when she gets her driver's license!!

We were proud of both kids for going on the full lift (not the bunny slopes) during their lessons.  The true test will be getting Johnny and I back on the slopes.  I don't think I've been skiing since we got married 11 years ago!  Unfortunately we've been a little busy with kids, doctor's appointments and this thing called life and work.  But it's exciting thinking that the kids are now getting to the age that some of these activities will be easier for us to do as a family.  Looking forward to the future, that's for sure!

As we close out the year, I think back to the year before and acknowledge how far we have come. Last year we had 25 doctors appointments, one surgery and about 70 therapy appointments (Reagan wasn't off the wait list until May after going to Kennedy Krieger's Constraint Camp).   This year we only had 11 doctors appointments and 48 therapy appointments (not including the dentist or orthodontist) and the second year in a row with NO hospitalizations!  I looked back at my blog post at the end of 2012 and we had 108 appointments that year!  We feel so blessed that life is becoming more normal and we hope to beat our record of 2 years without any hospitalizations in 2018.

As I think about our year, I can't help but think about the loss of my God son Evan.  He truly had a sweet spirit and was very special to me and to our family.  The four kids got along so well and we always enjoyed our play dates.  This picture was taken the week before he was called to Heaven in August.  His loss was a reminder to cherish each day.  To hold every moment as sacred.  To always say I love you.  And never wait for tomorrow as it may not come.  Evan's loss left a hole in my heart comparable only to losing my own child. This poem says it well...

I thought of you with love today 
but that is nothing new.
I thought about you yesterday 
and the day before that too.
I think of you in silence 
and often speak your name
All I have are memories 
and your picture in a frame.
Your memory is my keepsake 
with which I will never part.
God has you in his keeping 
and I have you in my heart.

I hope that all our friends and family have a happy new year.  I pray for health and peace for all.  Yet I know there will be loss and there will be pain, so I pray you each have the strength to face what you must and that you embrace each day with all your heart and soul. God bless!

Saturday, December 2, 2017

Neurosurgery and Neurology Updates

Well we're closing out the year with our usual neurosurgery and neurology visits.  We met with the neurosurgeon for both kids two weeks ago.  It's always good to see Dr. Myseros and get his perspective on the latest in the world of scans and shunts.

He said Reagan looks good and although he wants to continue to see her periodically, there is nothing overly concerning.  He did say that he's surprised we haven't considered tapering her off her epilepsy medication naturally by weight to see what happens.  I'm sure that will come up again when we meet with the neurologist, but as I've shared, her scans still show significant epileptic activity so it wasn't advised.

Dr. Myseros said Cole looks good and we talked about when he should have his next scan.  He'd like to have him scanned again before our next visit in the Spring.  Although we've been on this journey for over 8 years, I am always learning new things about my kids' diagnoses.  He shared a story about a patient who hasn't seen him in 8 years and although had no symptoms he decided to have her get a CT to check the shunt function.  The scan showed the tubing was broken despite not having any symptoms.  It gave me hope to hear that she may have become shunt independent.  Although he said he would never remove of the valve in the brain (unless it's malfunctioning), he will be conducting surgery to remove the tubing in her stomach and leave her "open" for a few minutes to see if anything is draining into the peritoneal cavity.  He said it is sometimes possible for the tubing to build up a "barrier wall" that allows the fluid to drain through tissue build up so that it looks like you are shunt independent but actually there is still drainage.  Anyway, the point is that he said there are significant long term complications from all that tubing in the body and it should be removed if it's not needed.  And BAM...there's the kick to the gut needed to shift you from hope back to reality.  But we live a life knowing his rate of shunt failure is 99% in the first 10 years so this isn't a surprise.  We are very blessed that Cole hasn't had any issues and pray that continues.

On to neurology...as you may remember, Cole graduated from his neurology appointments in the Spring but Reagan continues due to the epilepsy medication.  It was a good appointment and nothing new to share.  He said she looks good and is still within the therapeutic level for her medication so we decided not to increase it.  I did mention Dr. Myseros's question and he said that he believes in being more aggressive.  If she's ready to come off the medication he prefers to wean down over a 6 week period rather than coming down naturally based on weight.  He said he would like to have another EEG in the Spring before the next appointment and consider taking her off next summer.  I am definitely not going to get my hopes up, but it gives us something to look forward to.  Unfortunately, even if she appears to be seizure free they can always resurface like they did last time. It may be weeks, months or it could be years.  Being seizure free for 5 years definitely increases the chances of being able to consider coming off the medication except that the statistics are very different for cases with structural causes for the epilepsy.

Just as Cole could have a shunt malfunction any day and end up in brain surgery again, we've come to accept that Reagan will always face epileptic recurrence.  And while we so desperately want her to be independent of the medicine, I sometimes wonder if it's better to know she's medicated and safe.  The thought of letting her go swimming or climbing on a jungle gym not knowing if that will be the moment she has another seizure will bring with it another set of concerns.  And yet I worry about her being able to drive or bear children.  And although this is a long way off, and new medical developments may occur, it's hard to think about her being told she can't have her own children.   And so we continue with this thing called life and take every moment to enjoy what we have today not knowing what tomorrow will bring.

We were lucky to have a beautiful day to cut down our Christmas tree.  It's a family tradition for us to go the day after Thanksgiving.  Despite fighting over who got to pull it to the bottom of the hill, we had a great time and had a fun afternoon decorating it.  I'm very lucky Reagan loves putting on the ornaments as much as I do!  We also got their school pictures - they look so grown up!